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Lawsonval View Drop Down
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    Posted: Jun 14 2019 at 1:27am
i just received the results of my biopsy, showing tnbc. Met with the surgeon who reviewed my results but he was less than transparent about the tnbc.  No sign of lymph node involvement, but thatís before surgery.  lumpectomy and sentinel lymph node removal are planned in a couple of weeks.  Should there be a major difference in treatment between other breastfeeding cancers and tnbc, if the tumor is small, 10 cm approx? I went online to read about tnbc, and scared myself, reading about increased recurrence etc.  Do any of you have guidance for the very beginning of treatment? 

I live about 100 miles from Seattle, 
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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jun 14 2019 at 11:58am
Hi Lawsonval,

I know it's very scary and overwhelming to get this diagnosis, but you are not alone.  Lots of women in this group to help you out and share their experience.  Everything you read online can be scary.  The difference between TNBC and other breast cancers is they don't know what's driving TNBC in most cases.  So there's no targeted therapy like Tamoxifen or Herceptin.  We have surgery, chemo and radiation as the only treatment options.

You said your tumor was small so I think you mean 1.0 cm?  Are you getting treated in Seattle?  There are a couple of great cancer centers in Seattle.  Have they tested you for genetic mutations?  If not, ask them to give you a test. 




For me the hardest part was the diagnosis and the time before surgery.  You have to make a lot of decisions in a short period of time and it's so stressful.  Once the surgery/treatment begins you feel more in control.  The anticipation of everything was the worst part for me.  Take care and keep us posted on how you are doing.

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Jun 14 2019 at 11:21pm
Welcome Lawsonval, so sorry about your diagnosis, Donna is right that this is the scariest time on your treatment odyssey. The first time I was diagnosed, my biggest regret was not meeting with a medical oncologist BEFORE surgery. With TNBC its often best to do medical treatments before surgery. Talking it thru with the medical oncologist before surgery should be required with TNBC. And Donna is right about the genetic councilor meeting prior to surgery as well. It can change everything, especially surgery. With a smaller tumor of 1 cm you would have a good chance of fully eradicating the cancer prior to surgery, called a pathological complete response, with chemo and other treatments. Studies show that TNBC patients with a PCR after chemo have significantly improved event free survival and long term survival. Its worth discussing all your options prior to surgery while you still have all of the options available to you.  I've posted a link to an article below about that.
Feel free to come here with questions about anything! Or just to vent, all of us here understand the stress, anxiety, anger and any other emotion that's out there that can bubble up through all of this! You've caught it early and that's a good thing! But it is different with TNBC than other breast cancers, so you are doing the right thing educating yourself. 
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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Lawsonval View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lawsonval Quote  Post ReplyReply Direct Link To This Post Posted: Jun 14 2019 at 11:42pm
the tumor is 10 mm  or 1 cm at its widest point, to be confirmed obviously after surgery, canít believe I typed mistyped last night

Thanks for answering me, while in shock from the breast cancer diagnosis after reading about triple negative, it really scared me. Will read the articles you suggest. 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Meadow Quote  Post ReplyReply Direct Link To This Post Posted: Jun 15 2019 at 3:35am
Lawsonval, I was diagnosed with a 1.0 cm tumor in 2009 and I am living cancer free today. My oncologist said there is no need for me to see her any longer, that I am cured for sure. I have two family members and a good friend who are also officially cured of TNBC. Just wanted you to know that there is every reason for you to be optimistic that you will beat this.

I had bilateral mastectomy because I had a BRCA mutation. I did chemo and it wasn't easy, but not as bad as I feared.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Laurarev Quote  Post ReplyReply Direct Link To This Post Posted: Jun 16 2019 at 8:52am
I am not sure how to start a new post, so I am joining in on the lawsonval post. I hope thatís ok. I was also recently diagnosed with TNBC. I am a 46 year old, single mother of a 13 yr old boy and 11 yr old girl. I had a clear ultrasound, mammo, and MR in jan 2019.  Two months later I felt what seemed like a bruise on my right breast. I looked for a black and blue mark but saw nothing. I waited a couple of weeks for it to feel better, but it still felt like a bruise. Within about 3 weeks I could feel  a small lump where the bruised feeling was. I called my OB and he said I most likely had nothing to worry about as I just recently had clear testing in January and breast cancer doesnít hurt. He said it was most likely a clogged milk duct or a cyst and to give it a little time to see if it goes away. I am an elementary school teacher and I was planning a trip to Florida for spring break. He told me there was no rush to get it checked and to go on vacation and we would do a diagnostic ultrasound when I returned. Well I had the ultrasound on May 13, 2019 and Iíve been on this roller coaster ride since then. On May 21 I went back for a needle biopsy. The doctor called two days later to tell me it was cancer. I met with a surgeon 10 days later who informed me that I had TNBC. I had never even heard of this. My sister had stage 0 estrogen positive breast cancer two years ago and is doing great, thank God. I have been to many appointments over the past two weeks, I feel like itís been two years. I am being told this cancer is very different from hers in that mine is ďrare and aggressiveĒ the tumor is small measuring 13 mm, but the proliferation rate is high at 67%. The surgeon and oncologist have decided I will do a lumpectomy first on June 25 followed by ACT chemo and then radiation. We will not know until surgery if it is in the lymph nodes, but theyíre thinking itís not. 🙏🏻 I am very scared to say the least. My maternal grandmother also had breast cancer in her 40ís but she was in remission for 25 years. My sister had the myriad BRCA test and was negative. Sloan Kettering is doing an impact test on me which will look for 89 mutations. Does anyone know of a specific diet we TNBC patients should eat. Everything ok the internet is so confusing and it seems like there are foods we should or shouldnít be eating that differ from the other types of breast cancer. For example, Iíve read that avocados, broccoli and salmon are not ok to eat. How can that be?? Iím so confused. I just want to be as healthy as possible as I begin the fight of my life. Also, any advice on how to tell the kids? I went through a very tumultuous divorce two years ago. The kids have been through so much already and I want to handle this as gently as possible. So sorry for the very lengthy post. Any advice would be so greatly appreciated. 
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Danzig482 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Danzig482 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 16 2019 at 10:48pm
Can someone tell me how to start a new post? I was only told of my diagnosis on Wednesday and fortunately was able to get into a surge in the very next morning. Unfortunately, the realization that I am just a number came rather quickly. As of Friday afternoon the nurse had even called into the insurance to get my testing approved so that I can proceed with meeting with an oncologist. What? 
You actually called me in two days early to give me the diagnosis, with that ominous Ďand you can bring a friend along if you wantí line.....Well all three people in the rooms up there and wonít make eye contact with me when they use the words triple negative. But they advise I must cancel my Saturday trip (month out of country) because this is serious has to be acted on immediately. Then my patient navigator tells me not to worry she will be setting up my appointments and expediting everything, and will start a referral to Johns Hopkins if I want it but it will take 3 to 4 weeks so I need to start with local care.  She set me an appointment for July 3 with a surgeon then left town and wonít be back for a week so  ???? Why did I have to cancel my trip is it wasnít urgent and I can wait for just the initial appointment until July 3? Knowing that all of the other stuff wonít follow for another three weeks after that. Itís literally Manuel and to me that they were in the cave the aggressiveness and quicker as of this cancer and then take a lackadaisical. approach
I set my own surgeon appointment for the next day and I have a consult at Johns Hopkins next Thursday.  I guess when she said it takes 3 to 4 weeks to get in she meant it would take her 3 to 4 weeks to do her job and set up the appointment . (I could have been in Monday but the hospital was refusing to release my records so I had to speak to the chief of staff about that!)

Can someone tell me what tests your Surgeon ordered before sending you to an oncologist or surgery? The one I just saw ordered an MRI then bone scan and CAT scan along with genetic testing. They insist on me not leaving with the oncologist until the results come back so that I donít have to make two trips-obviously I would like to meet with the oncologist first to get some information so I can be better prepared when the results come in as far as how to proceed and understanding and he recommended treatment plan.
Also explain chemo? I know the treatment is probably different for everyone although I would think it would be pretty somewhere with TNBC. Is it something that you get every day for a week or two and then take a break and come back? Or are you just going for a day a week or what? Iím trying to figure out if I will have to move to Baltimore if I choose Johns Hopkins as my provider or if it something I can drive up a couple of days a week. 
With that said has anyone here had experience with Johns   Hopkins? Iím hopeful that I will find it to be more of a team approach and the better stuff expediting things along versus what I have experienced this far with the piecemeal approach. Itís literally only been 2 business days but I can see the train wreck coming trying to coordinate separate surgeon and oncologists etc- and each one putting me at the bottom of their priority list. Not to mention the battle but Iím sure details with my health insurance. 
Any info would be appreciated 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jun 16 2019 at 11:08pm
Danzig,

To start a new post/thread, go to the top left of your screen under TNBC Forums.  You will see different forums:  Welcome New Members, TNBC Talk, Chemo, Radiation, etc.  Click on the sub-forum heading you want to post in.  On the left side under the sub-forum heading you'll see a button "New Topic+".  Click on the button and you can start your own topic/thread.

I'm sorry you are getting the run around.  It's definitely a sign.  If they treat you like this now, you can probably expect the same during treatment.  Find a provider that you trust and values you as part of their team.  You are more than just a number.  John Hopkins is an excellent cancer institution. 

-Tatiana (Tanya) Prowell, MD 
     Johns Hopkins                                Baltimore MD


Originally posted by Kellyless Kellyless wrote:

One of my favorite doctors ever was my surgical oncologist the first time. It was so upsetting to not have him the second time! My loss is John Hopkins gain, he left to be chief breast surgeon of the shttps://www.nccn.org/patients/guidelines/breast-invasive/urgical oncology department there. Dr. David Euhus, if your lucky enough to go to John Hopkins, hes incredibly awesome. 


NCCN Guidelines for Patients:


DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Lawsonval View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lawsonval Quote  Post ReplyReply Direct Link To This Post Posted: Jun 17 2019 at 1:53am
Iíve had mammogram, diagnostic mammogram, ultrasound and MRI, and biopsy, no cat scan or bone scan, nothing on ultrasound or mri except for breast lump. I am planning to talk with my surgeon again tomorrow as I didnít really understand the triple negative concerns until reading more about it.  Iím not sure about the genetic testing, and will have to ask.  My biopsy looks pretty dismal to me, after looking up the factors, and need to talk about that again with the doc too. I am going to get a second opinion.  I hate the uncertainty. I am 64, no family history of ANY type of cancer.
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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jun 17 2019 at 8:06am
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Jun 17 2019 at 9:31am
I'm so very sorry Danzig, know that these early days are the WORST and you will get thru them. #1 - most important - go on the dang vacation!!! If it's longer than a week, shorten it to a week but GO. You re just going to get all the routine testing done at your local (ahem....sh*tty) hospital - scans: bone, heart, CT, MRI. Little things will show up on them that need follow up, (mine was a "thing" on ovary, lung,  back rib resulting in ultrasound =fluid filled cyst, xray=healed rib fracture I didn't know I had, ?? Don't remember lung test but was a scar from pneumonia 20 yrs prior, all NBD) little things that will terrify you but are 90% of the time nothing. The only deadline on this stuff is before you go to John Hopkins and get Real medical care. And you are so lucky to be able to go there!!! Seriously. I started the first time at a for profit hospital it was a nightmare just like you describe. A kind neighbor that had "normal" breast cancer asked to come speak to me after my diagnosis. She asked if I'd gotten a second opinion? No, I was to freaked! She explained, "I go to UT Southwestern. It's a Non profit research and teaching hospitals. How do I explain the difference.....it's like the doctors at (terrible hospital that rhymes with Taylor) are trying to pay off their Ferraris, at UT they're all trying to CURE CANCER". OMG was she right! My second opinion appointment was with Dr. David Euhus (now head of breast surgical oncology at JH). He spent an hour and a half with us and for the first the first time I felt like I was going to get thru this and live. Early July is soon enough, that's fine. You can even make a plan for chemo with local hospital, with a start date of a week after your two appointments at JH (you are going to get an appointment with a surgeon, hopefully Euhus as well because why wouldn't you?) I had a rare recurrence 7 years after the first time. I needed a second opinion, and I wanted MD Anderson. At the last minute our TNBC guardian angel Steve (he's here on this site) got me an appointment - the Thursday before I started chemo on Monday. My doctor at MDA suggested a different chemo regimin. He and my local doctor worked with my insurance company and got the change approved in One Day, I started chemo on time. It usually takes 6+ weeks from diagnosis to surgery or chemo to start so just.....breathe. Ask your doctor for some Xanax if your anxiety is awful. This is a marathon not a sprint so you need to take care of yourself. and go on vacation!!! It's going to be quite a whi!e before you can do that once treatment starts so GO! 
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Danzig482 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 17 2019 at 5:55pm
123Donna- Iím going to Johns Hopkins on Thursday. The stuff they gave me the diagnosis said it would take at least four weeks to even get noticed there but Machelle has been an absolute angel and got me right in. Iím pretty excited since I get to meet with a surgeon and oncologist same day.  Thank you!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Danzig482 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 17 2019 at 6:21pm
kellyless - euhus is one of my doctors for Thursday. I reaearched his whole career and life yesterday at the airport and am thrilled they put me with him. Feeling pretty lucky!

My vacation was for a month -  I bought a house in Nicaragua so that I could help the people of the village there and I try to go if you times a year. Sad i canít go because they count on me but I get plenty of vacations and can go soon enough. I did book my reservation biktoberfest in october, just upgraded my Harley in May 😍

The only Ďscareí Iíve had is the not knowing. Until the mris and scans come back who knows but Iím not expecting bad news. Prepare for the worst and hope form the best. My baby girl is coming down From Penn State tomorrow to meet me in Baltimore so that I can tell her the news and I think I might give her the option to go to the appointments with me. Having to tell my kids has been them worst. Justice took it well this weekend but heís older and independent. My college babe, l am gonna cry my eyes out when I tell her and sheís probably going to laugh and tell me to pull it together 😂

I am incredibly thankful i have the means and opportunity to go to Johns Hopkins. Itís four hours away but Iíll just fly up on my broom 😂 or stay short term. 

Thanks so much for the info. Is there a way to send a private message if I have a specific question for you?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jun 17 2019 at 7:21pm
Danzig,

An easy way to send a PM is to click on the member's name.  You'll see a drop down menu and one option is Private Message.

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Danzig482 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 17 2019 at 7:44pm
thank you - still donít see it but I think my mobile doesnít always show the same as a desktop screen
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jun 17 2019 at 7:49pm
When I click on your name on the left side, I see "Send Private Message", but I'm on a desk top, not mobile.

The other way to send a private message is go to to the "Member Control Panel" link in the upper left side of the screen.  You'll see an option for Private Messenger (about half way down).

You can also go to the upper right side of the screen and select "Memberlist".  You can search for the member name and then select "Private Message" about halfway on the right side of the screen.  Hope these options work for you.
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Danzig482 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 17 2019 at 10:44pm
ok- pm I can see - new post , nope! Lol but thank you I donít know that Iíll need to do a new post. Just trolling (in a good way) for useful info.
Thank you!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lawsonval Quote  Post ReplyReply Direct Link To This Post Posted: Jul 05 2019 at 4:55pm
Ladies, I have spent my last few weeks reading and educating myself about TNBC, with many thanks to all of you on the forum.  I have a small 7-9 mm tumor, which is shaped like the lead in a color pencil. It can only be seen looking across the breast, and cannot be seen in any test method so far looking through the breast vertically.  I am having a lumpectomy and sentinel node removal next week. No evidence of sentinel node involvement (though who knows what surgery will say).  Can any of you help me with an article explaining how risk ranking is done to determine if chemo is recommended.  Or is it always recommended for triple negative?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jul 05 2019 at 8:46pm
Lawsonval,

Usually the cutoff for recommending chemo is 5 mm.  

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Jul 05 2019 at 10:20pm
Hi Lawsonval
   I live in WA state too, the north central part, so quite aways from Seattle. Best thing that happened to me was to go to Fred Hutch for a 2nd opinion, they ended up signing me up for a NIH clinical trial and then I was able to get my chemo and treatment at their Mt Vernon satellite office.
   You can PM me if you want to talk about being distant from Seattle and how it impacts treatment.
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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